Camzyos help

Hi @lesliegreene, and welcome to Mayo Clinic Connect.
I don't blame you for being afraid or nervous about side effects of Camzyos.
https://www.camzyos.com/
I posted a link to the Camzyos site that may help you learn more about it.

For sure, not everyone will have the same experience using this drug. For some it's a miracle, for others they do not have improvement. There is fear involved with anything new, but if you have done your homework and weighed the costs vs the benefits...or pros and cons...then you get to decide which course to take.

Have you had a good long talk with your cardiologist about all the side effects?
Or looking at the positive, had you had a good long chat about the benefits of this drug?

Hi @lesliegreene , I'll echo the welcome you got from Debra. This is a great place to hear from other people about their experience with oHCM and with Camzyos. Take the time to check the discussion thread https://connect.mayoclinic.org/discussion/camzyos-mavacamten-prescription/ which has been open for a couple years now and has LOTS of feedback. Remember that most of us are just ordinary people, not cardiologists, so look to your professionals for actual medical advice. https://www.camzyos.com is a great site that puts a lot of complicated medical information into a form that even I could understand! Worth the time to have a look there, for sure.

Remember too that any medication, even cough syrup, may affect some people negatively, but that doesn't mean it's a bad med - just that it wasn't a good fit for them. And with any medication there will be a pro-con balance that you will need to be comfortable with. Like Debra said, your cardiologist will be your best source of good information.

I'm one of the lucky people for whom Camzyos has been life-changingly positive with absolutely zero negative side effects. Like you, I was nervous when it was first suggested. But what to do if you DO feel worse on Camzyos than you did before? The first thing that will probably happen is that they will try adjusting your dosage - I expect that almost all of us have had that happen. Then, if that didn't help, they might take you off it completely. As I understand it (re-read my disclaimer about not being a doctor), if you stop taking Camzyos, it will start to wash out of your body and you will return to the way things were before you started taking it. Then you and your cardiologist can look into other options.

An oHCM diagnosis is going to be scary, no matter what options you start looking at, surgery, medication, septal ablation. But there ARE options. For most of us, something will be there that will work. Try to remain positive, check into the resources this forum can offer, talk to the folks here who have been, or are still going through it. Don't let fear overtake you. Good luck with whatever path you walk.

Hi @lesliegreene, In general I tried to avoid all meds except what was absolutely necessary for my hypothyroidism & glaucoma. Instead, I experienced all the symptoms of oHCM for decades (I'm 72) & blamed myself for being out of shape. So I was very apprehensive about Camzyos & possible side effects. But I did trust my HCM cardiologist & decided to try it. They monitor you so closely that I felt reassured of my decision. As @boatsforlife said, adjustments may be needed (my dose has been adjusted based on my echo findings) but that is a good thing. I have not had any negative side effects and it has made a huge positive improvement in my daily abilities. I was asking for a handicap placard before starting the med because I was afraid I could not make it back to the car on hot days, had difficulty bending over to pick up things, thought I would pass out in the shower, had to stop while climbing stairs because of chest pain/squeezing, and avoided a lot of activities especially after eating. My physician said I would not need the handicap placard after starting the medication and he was correct. The other mentioned symptoms are no longer a problem either. Best of luck.

I am 78 and I take 10 mg of Camzyos - for the last two years. While I still have cardiomyopathy, the obstruction has completely disappeared. My EKG’s are normal. Pls try the drug and see how it works for you
Deborah

Hi @lesliegreene and welcome!
Your post just spoke to me when I read it as we have the same way of thinking it seems, down to the wording! This was me in May: ”How can something that is supposed to help heal my heart cause heart failure? I don’t understand.”
My anxiety before taking the first dose was so high my hands were shaking, I was sweating and my stomach was in knots. My brain was convinced I was going to perish from the first dose. Silly, ha? Now that I have been on Camzyos for almost 6 months I can honestly say it’s a gamechanger. I started on 5mg, which was increased to 10mg in August and in September I got the news that my obstruction was gone. That means that I still have HCM, but the obstruction that was causing the shortness of breath, the fatigue and the inability to walk a flight of stairs without getting majorly winded was gone.
I feel I’ve put so much emphasis on the “what if it affects me negatively” that I didn’t even think of the opposite. I’ve focused too much on the heart failure part, which I know now just means that your heart isn’t performing the way that it should on the medication and since we are all closely monitored (every 4 weeks) it can be quickly resolved. It doesn’t mean that your heart will just stop working (which is what I thought). I do have to say that I did have some side effects like lightheadedness and a month of slight hair loss, but the latter could have been contributed to my hormones (I’m 41).
Just trust the process, listen to your body and talk everything out with your cardiologist. When you go in for your echo ask all the questions you can think of, write them down, if you need to beforehand so you don’t forget.
I wish you all the best and let us know how you feel in the coming weeks.